Hazel McHaffie

Motor Neurone Disease

Marriage, death and blueberry muffins

I’m frequently amazed at how many articles in the newspaper touch on my subject area on a daily basis. Sensationalised often. Distorted even. But drawing attention to important issues nevertheless. Take yesterday’s edition for example.

A judge has just ruled that a 67 year old man who has had Motor Neurone Disease for 10 years, may be allowed to end his life peacefully by declining treatment. So? you might be asking, I thought any mentally competent patient had the right to refuse medical treatment. Indeedy. But in this case the patient has been unable to communicate his wishes directly for some time; he can only use eye movements. An advance decision was formally drawn up last November after several discussions and with all the important people present. Watertight you might think, but apparently a carer who wasn’t there, cast doubt on the nature of the patient’s consent, hence the case went to the High Court for clarification. Sad that the family needed to endure this additional delay and burden. The question is: Would you consent to this for yourself or your loved one? As a professional, would you have allowed it to go ahead unchallenged?

Still with death, an American study (published in Personality and Social Psychology Review) has discovered that awareness of mortality can have positive effects. Really?!! The headline put it: ‘Save your marriage by thinking of death’. Not surprisingly, it makes people value the finer things of life more. But, how ready would you be to clutch at this particular straw?

The social network site Facebook has just launched a new feature to encourage users to sign up as organ donors. It’s reported that 6,000 signed up to Donate Life America by the end of the first day. A ‘health and well-being button’ allows users to register with the optional extra of telling their friends (or the world if they prefer) that they have become potential donors. Question is: Are you a registered donor? If not, would you be more inclined to join up this way?

Me, I’ve been in the business long enough to have registered as a donor online years ago, and to have drafted a formal advance directive which has been duly signed and witnessed, and to have notified my family of all these wishes and intentions. But I’m only too pleased the media are raising the nations’ consciousness of the issues.

But to end of a lighter note … also in the newspaper this week a survey carried out by a food company, actually reported that one youngster in six regarded a blueberry muffin as ‘fruit’ that counted as part of their five-a-day recommended intake. As they say: You’re avin a larf!

Seems to me journalism could be fun!

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A plague on platitudes!

Crucial Decisions at the Beginning of LifeIn my former life as a researcher at Edinburgh University, before I became a novelist, I spent a number of years with bereaved parents. Now, I don’t know about you, but I can’t think of anything much more harrowing than watching your child die.

And yet I heard first hand from these grieving men and women that a large number of their relatives, friends and acquaintances churned out platitudes like: ‘He was only a baby, you didn’t really know him’, ‘At least you can have another one’, ‘You’ve still got John and Polly.’ In effect saying: You have no right to grieve. It’s no big deal.

Those parents changed me forever. I’ve never quite regained my tolerance for those who make heavy weather of trivial burdens and moan about their lot.

A similar (though far less damaging) experience is coming my way at the moment. I’m being told to count my blessings in one form or another, or I’m being told what I must be feeling. I have visions of carrying a placard:
I KNOW she’s at peace; I KNOW she lived a full life; but SHE WAS MY MUM. I really, really, really don’t need you to diminish my loss.

I felt the iniquity of these kind of platitudes acutely some years ago when I was inside the skin of one of my characters, Adam O’Neill. He’s a young journalist, Right to Dieat the peak of his potential when he develops Motor Neurone Disease in Right to Die. He’s facing an early death. He’s fully aware that though his body will disintegrate inexorably, his mind will still be functioning normally, totally conscious of the gathering horror. Imagine that kind of living death … if you dare.

I’m going to reproduce his reflections on how people reacted to him in full, because he sums up the iniquity of denying someone else in dire trouble the right to feel lousy and sad and angry.

While other people are writing Christmas lists, I’ve started to compile a glossary of things people say alongside my private responses. Outwardly, I’m afraid, I’m still locked into the hypocrisy of polite social exchanges.

‘You can still lead a full life.’
Being in a wheelchair, struggling for breath, may seem full to you, pal, but I’ve known better and by my yardstick it stinks.

‘Your attitude will make all the difference.’
Why do people put the onus on me? If I deteriorate quickly, will that be a comment on my approach to life? If it’s legitimate for you to be fed up with trivia, why can’t I be frustrated by this major disaster?

‘Try not to worry about the future, we none of us know what it holds anyway.’
Maybe, but I know pretty much what mine looks like; you can still believe that on the law of averages you’ll have a reasonable lifespan and kids and a career and a pension.

‘Enjoy today. Think positively about what you can do, not what you can’t do.’
I’d like the feel of that if I said it myself; I hate it when other people in perfect health slug it to me.

‘Channel your energy into creating the best quality of life you can.’

‘It’s a good thing you don’t have kids.’
Now that is below the belt. I’d give a king’s ransom to have the assurance that something of me lived on after my death.

‘At least Naomi’s still young enough to start again.’
Start what? D’you think I haven’t recognised the fact that she’s young and attractive and desirable and ready for the next stage in her hormonal life? Do you have to tell me she’ll probably have kids with some other bloke? Do you?! Damn it, I want her to be happy with me! Have kids with me!

‘Live positively with MND.’
That’s one of the most patronising comments to date. It conjures up those Pollyannas who are paralysed from the neck down, or whose families are wiped out by a senseless act of terrorism, who go on record as saying they’re a better person for having tribulations in their lives. Ergo, they’re glad they’ve had these things happen to them. Give me a break! Goodness thrust upon you can’t be the same value as goodness you chose to cultivate, can it?

‘I see you’ve kept your sense of humour – that makes all the difference.’
I’m sure it helps you, but remember it costs me. Just because I’m poking fun at my own inebriated gait or my drunken slurring doesn’t mean I’m laughing on the inside. Sometimes it’s just a cover to defend myself from pity, or ridicule, or too much sympathy. Or it’s because if I don’t laugh I’ll slip below the surface and in all likelihood never come up for air again.

On a good day I can tell myself most of these things but if there’s one piece of advice I’d give to everybody about dealing with folk in trouble, it’s this: Never ever count their blessings for them, or exhort them to count them themselves. Contrarily I know if someone else commiserates with my plight, my instinctive response is along the lines of: Things could be a lot worse; and to focus on what I can do. But that’s my prerogative, no one else’s.

I leave the last word on the subject with him.

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